CFSAC Testimony - May 23, 2013
My name is Jill McLaughlin. I have been involved in advocacy for 15 years and have worked with many patient groups and organizations.
I would like to address the ongoing issue of diagnosis and terminology. This is a CFS committee, yet has included ME and ME/CFS.
However, ME patients do NOT want their illness to be called CFS or changed to ME/CFS.
These CFS / CFIDS / “ME/CFS” groups continue to promote the association, ostensibly to make CFS sound more serious. These groups have no right or mandate to represent or speak for ME patients, even though they may claim to, and collectively have too few members to presume such a thing.
ME is a stand alone dx. We do not need two names. ME is a neurological illness based on CNS dysfunction. Fatigue has no more to do with ME than it does with AIDS, MS or cancer.
ME is a testable dx of inclusion, with signs and objectively measurable pathology. CFS is an unexplained, un-testable, heterogeneous dx of exclusion. Not the same.
Contrary to widespread misinformation, the Canadian ME/CFS definition is not an ME definition. It was published a decade ago in a journal that no longer exists. The authors of the Canadian ME/CFS definition have abandoned it in favor of the ME-ICC.
The ME-ICC were written by an independent group of doctors and scientists, who, collectively, have 400 combined years of clinical and research experience, and have diagnosed or treated approximately 50 thousand patients.
The ME-ICC specifically rejects labeling ME as CFS or ME/CFS, and clearly spells out that the objective is to split ME from CFS. They aren’t talking about subgroups, but DISTINCT separation.
This was based on scientific consensus using the delphi process, not personal preferences or political consensus based on beliefs or opinions of a narrow group, which currently seems to be the case.
The CDC multisite study will not clarify or solve problems of identifying or defining ME and CFS. This study fails to use structured clinical interviews in order to exclude psych disorders.
Sites chosen are mainly run by CFS doctors and even Fatigue clinics. With no case definitions, there are those who ascribe to the mixed ME/CFS paradigm, reducing it to merely semantics. It should not be up to a narrow, select group to subjectively decide.
Without specific case definitions to ensure that the same, uniform cohorts are used, data are flawed and results are meaningless.
There is often myopic discussion about which definition is best, but no one definition fits different illnesses.
Even using a specific term cannot ensure that we know what illness or patients are being identified, due to the conflation and combining of terms and diagnoses: ME is called CFS; CFS is called ME. And ME/CFS is up for grabs (no WHO recognition, ICD code or established case definition).
Consequently, we may have so called ME studies that contain no actual ME patients. Would MS patients allow studies to publish on MS that contained no MS patients?
From the translational aspect, it is clear that CFS research does not apply to or help ME patients, and vice versa.
It is unacceptable and the opposite of WHO convention to allow the broad, heterogeneous CFS as the main ICD tabular entry, with historically defined ME demoted to a mere synonym, despite the fact that ME is the correct medical terminology for the disease as recognized by the WHO since 1969, while CFS, the political lay term, was added to the alphabetical index ONLY in 1992.
Redefining ME/CFS is a syllogism, as there is really no such recognized diagnostic entity. Evidence based methodology will not work, as the evidence base is polluted with all these mixed, mislabeled studies with dubious or conflicting results.
There is no need to make up another mixed and potentially watered down ME/CFS definition, and then talk about subgroups for the next 20 years.
The last time that HHS was involved in defining an illness, we all know how well that turned out.
ME patients have been neglected under the broad CFS umbrella for far too long.
ME patients need an accurate diagnosis and appropriate research done on true ME patients, not incorporated with or compared to CFS.
« Last Edit: May 26, 2013, 09:48:09 PM by Wildaisy »
Never be bullied into silence; speak your truth even when your voice shakes.